The day my older daughter was born, I had been expecting a son. When my husband looked at the wriggling pink mass being lifted from between my legs, I called out to him, “Is it my little boy?”
“It’s a girl,” he said. “It’s a daughter.”
Lying there, on that bed, I realized two things at once: firstly, how deeply I must have been afraid of having daughters; and secondly, how happy I was to have one.
Three years later, I had another daughter after another pregnancy of being certain the child I was carrying was a boy. We did no gender-checking ultrasound with either child, but my intuition, I realize, must have remained blocked by that fear of raising girls. How, I wondered, can I make them less messed-up than me? Continue Reading…
Some days, I selfishly look back at all the time we waited for an answer to my daughter Sammi’s health challenges and see only how it wrecked my image of what motherhood should be.
I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.
Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window unavailable.
Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.
This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?
The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.
Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.
When we brought our daughter Sammi home from her week-long stay in the hospital following cardiac surgery, we had an extra challenge to face. When we planned the surgery, we’d known that once we got her home (if we got her home), she’d need to rest. We’d expected that she’d be tired, that she’d be loopy from the medication. What we hadn’t expected was that she’d be one of the percentage of patients who undergo similar surgeries and end up with a complication called chylothorax.
Chylothorax is a long, ugly word for a leak in a thoracic duct. The thoracic ducts are part of the body’s lymphatic system, located mostly in the chest, and are responsible for — among other things — the processing of about 60% of the body’s dietary fat, which flows through them. Because the thoracic duct is located alongside the aorta, Sammi’s surgeon warned us that they might nick it with an instrument during surgery. “If that happens,” he said, “it usually heals on its own, but she might have to follow a special diet for a while.”
I barely listened. Special diet? I’d done special diets over and over again since Sammi was a baby. A diet would be no big deal. Also: it might not even happen! I did no research on chylothorax before Sammi’s surgery.
And then she had it. In clearing layers of scar tissue from the side of her esophagus, the surgeon had met with a thoracic duct, and the damage was done.
The diet, we learned, was fat-free. It didn’t mean fat-free the way that the weight-loss diets of the 80s meant “fat-free” — many of those foods, we learned, had a gram or two of fat. In a normal person with a functioning thoracic system, that’s close enough to fat-free. In someone with chylothorax, a gram of fat here and there would eventually leak out of her thoracic ducts and fill her chest with a thick, milky substance that had nowhere to go. Eventually, without more surgery, she’d drown from the inside.
When my daughter spent six days in the hospital for the cardiac surgery that would change her life, I saw daylight and felt fresh air only for a few moments a day on my way from the garage to the hospital or vice versa. When we went home, we resigned ourselves to staying inside some more.
Sammi was cozied into a corner of the couch that her older sister had lovingly lined with soft blankets and fluffy pillows, but she was itching to move. Unfortunately, doctors’ orders were that she not only sit still, but that as long as she stayed on strong pain medication, she also needed to be accompanied up and down stairs by an adult and watched when she was in the bathroom. She grumbled and sometimes outright cried about this state of affairs. I did neither, but the emotions I’d kept in check in her presence for the last week were beginning to bubble close to the surface. Though I’ve never had trouble staying calm and steady for her, I knew there was a limit to the holding-it-together I had in me. Sooner or later, I needed to get out.
When my husband went back to work, there were still two weeks of at-home healing left for Sammi. One of my close friends had offered to come over one day and sit with Sammi so that I could get out, just for an hour or so. Deciding to take her up on it was hard for me, though I knew all the platitudes about mothers needing to put on their own oxygen masks before helping their children. I needed the break, and I also needed to be watching Sammi at all times for any sign that something — some undefined something — was going wrong.